World Health Organization joins other partners to support Nodding Disease investigations in Southern Sudan

The World Health Organization in collaboration with GoSS-MoH, CDC Atlanta and UNICEF has supported an investigation of the Nodding
Syndrome (NS) in Witto and Maridi counties in Western Equatoria Statem Southern Sudan in order to describe NS and to confirm its risk factors.

Nodding Syndrome has eluded many researchers, remains a misery as no cause has been discovered. This isaworrying disease.
During a meeting to the share the preliminary results at New Sudan Hotel, Dr. Abdinasir, the Medical Officer for Communicable Diseases and Surveillance at the WHO Office in Juba associated the availability of in depth information of NS in Southern Sudan to the
improved surveillance system in the past few years and weekly surveillance data received from the states and counties. He said that due to surveillance, the geographical distribution, date of onset, common symptoms and the age of the affected children is much known. “We need to strengthen surveillance in affected communities so to be able to identify other serious problems and learn more about the magnitude of the NS”. Said Dr. Abdinasir.

He pledged WHO Technical and financial support to the establishment of the causes of the Nodding syndrome and also provide antiepileptic drugs and other symptomatic treatment.

He said the recommendations that wouldcome from the preliminary investigations will give an understanding of how the children with the nodding disease canbehelped.

According to the preliminary results available, there were high levels of Onchocerca Volvulus (OV) positivity by skin snip. Sixty three (63%) of all the children that participated in the study had skin snips that tested positive for OV. The positivity rate was 75% among cases with Nodding syndrome (n=52, count 0-30/LPF, Mean= 3-8/LPF) and 47% among healthy children (n=38, Count=0-17/LPF, mean=1- 5/LPF).

In Witto one of the areas where the study was conducted, 58% of cases and 54% controls were positive while in Maridi, 89% of cases and 44 % of controls were positive.

A similar investigation conducted by MoH Uganda, CDC Atlanta and WCO Uganda in northern Uganda found “a significant association between reports of munitions exposure, consumption of crushed roots and the presence of antibodies against the microfilarial Onchocerca Volvulus among cases when compared to the unaffected controls” reveals Dr. James Sajver from CDC.

The investigations were conducted with the objectives of; ascertaining that the nodding syndrome observed in SS is the same as in other parts of the world, establishing a case definition, describing the disease further and to confirm risk factors.

Recommendations so far made by the team include: Children with nodding syndrome be given antiepileptic drugs given that children
with NS also have seizures that are responsive to antiepileptic medications. The current mass treatment program be supplemented in areas of apparent high Onchocerciasis endemnicity and Children with NS be psychologically and socially supported.

Other recommendations are; a need for strengthening of the surveillance and obtain cases house by house during national immunization days and offer social support to the children with NS and encouraging parents not to isolate them. Children with Nodding Syndrome, tend to nod their heads when the patient sees food or when he/she feels cold then will develop a seizure like condition. As soon as either of these conditions is met, the afflicted will immediately begin to nod. These are brief and stop soon after the child stops eating or when they feel warm again. However, this symptom is very unusual as the patients don't appear to suffer from seizures when they are given an unfamiliar food, for example a chocolate or non traditional food. The seizures can be severe and cause the child to fall, leading to head trauma.

The disease is common among children aged between 5 15 years and is a novel form of epilepsy that is fatal, mentally and physically
disabling disease.

The symptoms of NS are very peculiar. When a child is affected, his/her growth appears to be completely and permanently stunted. The growth of the brain is also stunted, leading to mental retardation of the patient.

For more information on the investigations of the Nodding Syndrome, please contact: